A new generation faces toxic shock syndrome

Originally published January 26, 2005 at 12:00 am

Updated January 25, 2005 at 7:50 pm

The bacterial disease is on the rise, some researchers believe, though nobody can pinpoint exactly why. Theories range from increasing tampon use by younger girls to manufacturer recommendations that tampons be used overnight.

Toxic shock syndrome, Kourtney’s mother believed, went away more than two decades ago when a problematic tampon was taken off the market.

“Since they hadn’t been talking about this in years, you think you are safe,” said Tracy Matthews, Kourtney’s mother, who enforced a strict curfew on her daughter and only recently allowed her to date.

But to her horror, her 16-year-old daughter was hospitalized in November with flulike symptoms, the hallmark of the dangerous disorder. And within 24 hours, the spirited Milpitas High School junior was dead.

The cause was toxic shock syndrome due to retained tampons, according to the Santa Clara County, Calif., Medical Examiner’s Office. That means Kourtney had not removed a soiled tampon.

TSS symptoms

The warning signs of toxic shock syndrome include:

Sudden fever, usually 102 degrees or higher

Vomiting

Diarrhea

Dizziness

Fainting or near fainting when standing up

A rash that looks like a sunburn

To reduce your risk:

Use lower-absorbency tampons

Change tampons every four to six hours

Alternate using tampons and pads, or avoid using tampons altogether

Source: Food and Drug Administration

Now Kourtney’s friends and relatives are pushing to get the syndrome mentioned in high-school health-education classes, and plan to do everything they can to raise awareness about the often forgotten bacterial disease.

“I’m never going to see her get married. I’m never going to see her have kids. My daughter is gone,” said Matthews, who still struggles to understand it all. “And to be struck down by this? To be taking care of your own personal hygiene? That’s hard.”

Cases of toxic shock syndrome in menstruating women dramatically decreased in the early 1980s and have remained at relatively low levels since. But some researchers believe the condition may be making a comeback, for reasons they don’t yet agree upon.

The Centers for Disease Control and Prevention stopped tracking toxic shock cases more than 15 years ago. But in California, eight people died from the syndrome in 2002, according to the California Department of Health Services. There were four deaths in each of the previous three years.

And a study published in the Journal of Clinical Microbiology in June found that cases in one region of Minnesota more than tripled from 2000 to 2003.

“Physicians had been calling me saying, ‘I hadn’t seen any cases for a while and now I’m seeing them,’ ” said Patrick Schlievert, the University of Minnesota professor who did the study.

Schlievert said he believes the rise in cases in his state may partially be due to the fact that girls are getting their periods at younger ages these days — and research suggests younger girls are most at risk for the condition. Girls also are more likely to use tampons than previous generations.

But Dr. Philip M. Tierno Jr., director of clinical microbiology and immunology at the New York University Medical Center, has other ideas. Tierno, who helped determine that tampons were behind the spate of toxic shock cases in the early 1980s, blames the introduction of higher-absorbency tampons in 1999, as well as the relatively recent decision by manufacturers to recommend that tampons can be worn overnight.

“We’ve probably done more research on coffee filters than we have on tampons,” said Rep. Carolyn Maloney, D-N.Y., who introduced the Tampon Safety and Research Act in 1997. The measure, which keeps stalling in Congress, calls for more research into the hygiene products as well as the introduction of a federal reporting system on toxic shock syndrome.

But the potential increase in cases is not cause for panic, experts say.

Schlievert’s research found that for every 100,000 women who use tampons, three to four develop toxic shock syndrome in any given year. And if detected early enough, the condition can be treated.

“That’s not lots and lots and lots of cases,” Schlievert said, “but it’s still out there.”

Toxic shock syndrome is caused by Staphylococcus aureus, a virulent bacterium, which often needs blood and oxygen to thrive. It can strike not only tampon-using women during menstruation, but also men and women who develop skin abscesses or undergo surgery.

Many people have antibodies to the bacteria in their blood, which render them immune to toxic shock.

The dangers of toxic shock syndrome were first ingrained into the public consciousness in 1980, when 814 menstruating women developed the condition, and 38 died from it. Federal health officials determined the primary culprit was a highly absorbent tampon called Rely, which had recently been introduced. Manufacturer Procter & Gamble pulled the product from the market, and the number of cases dropped immediately.

But the makers of feminine-hygiene products are the first to concede that toxic shock syndrome never disappeared from the American landscape.

Tucked inside every box of tampons is a warning that states in no uncertain terms, “tampons are associated with toxic shock syndrome.” The information sheet inside Tampax spells out: “One to 17 of every 100,000 menstruating women and girls will get TSS each year.”

The federal Food and Drug Administration, which considers tampons to be medical devices, requires that the warnings accompany every package. And they appear in English, Spanish and French.

The syndrome is, “very, very rare, but it does occur,” said Jay Gooch, a spokesman for Procter & Gamble, which makes Tampax.

“The key to minimizing risk is really education. It’s about reading the box and reading the inserts,” he said. The instructions encourage women to change tampons every four to eight hours and to use the lowest absorbency tampon to meet their needs.

But critics say that doesn’t go far enough to protect young women like Kourtney, who died Nov. 1.

“There will be no prom. No college. No grandkids. No more hugs and kisses,” said C. Flavor Dyer, whose son had been dating Kourtney and told his mother he hoped to marry her one day.

“All her future is taken by a doggone tampon,” Dyer said. “It’s just devastating.”